Nursing Inquiry 2015; 22(3): 240–248
Feature
Disclosing discourses: biomedical and hospitality discourses in patient education materials € € a,b Febe Friberg,b,c Sylvia M€ b,e Stina Oresland, a€att€ab,d and Joakim Ohlen b and Vestfold University College, Drammen, Norway, University of Gothenburg Centre for Person-Centred Care, Gothenburg, Sweden, cUniversity of Stavanger, Stavanger, Norway, dCentre for Equity in Health Care/Institute of Ersta Sk€ondal University College and Ersta Hospital, Stockholm, Sweden, eThe Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden aBuskerud
Accepted for publication 24 February 2015 DOI: 10.1111/nin.12097 € € ATT € A € S and OHLEN € ORESLAND S, FRIBERG F, MA J. Nursing Inquiry 2015; 22: 240–248 Disclosing discourses: biomedical and hospitality discourses in patient education materials Patient education materials have the potential to strengthen the health literacy of patients. Previous studies indicate that readability and suitability may be improved. The aim of this study was to explore and analyze discourses inherent in patient education materials since analysis of discourses could illuminate values and norms inherent in them. Clinics in Sweden that provided colorectal cancer surgery allowed access to written information and ‘welcome letters’ sent to patients. The material was analysed by means of discourse analysis, embedded in Derrida’s approach of deconstruction. The analysis revealed a biomedical discourse and a hospitality discourse. In the biomedical discourse, the subject position of the personnel was interpreted as the messenger of medical information while that of the patients as the carrier of diagnoses and recipients of biomedical information. In the hospitality discourse, the subject position of the personnel was interpreted as hosts who invite and welcome the patients as guests. The study highlights the need to eliminate paternalism and fosters a critical reflective stance among professionals regarding power and paternalism inherent in health care communication. Key words: deconstruction, discourse, health literacy, patient education materials, qualitative study.
In clinical contexts, appropriate information regarding diagnosis, long-term and care services conditions could prove vital for patients suffering from various diseases (Verkissen et al. 2014). Proper information may be a prerequisite to give patients opportunities to form informed decisions, lower levels of distress and increase patient satisfaction (Gal and Prigat 2005). However, the use of information depends on many factors, for example, language and health literacy may have an influence (Gal and Prigat 2005). There are many definitions of health literacy, but we refer to Berkman, Davis and McGormack (2010) who denote health literacy as € Correspondence: Stina Oresland, RN, PhD, Senior Lecture, Department of Health Sciences, Buskerud and Vestfold University College, Postboks 7053 3007 Drammen, Norway. E-mail:
knowledge and competencies to access, understand, appraise and apply information regarding health or diseases. Central to health literacy is the question of the individuals’ ability to acquire, understand and use information in order to maintain, promote or improve health (Berkman et al. 2010; M artensson and Hensing 2011). However, conditions for health literacy are not only related to individual capabilities, but also to the individual’s access to available, relevant and reliable information (Hill 2007; Nutbeam 2008; Berkman et al. 2010; M artensson and Hensing 2011). Given such a background, the quality, readability and usefulness of patient information are crucial (Smith et al. 2014). Patient education material (PEM) is a generic term used for written information, advice and counselling given to patients and relatives about medical conditions, available © 2015 John Wiley & Sons Ltd
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services, treatments and care procedures. They are intended as a complement to oral information (Helitzer et al. 2009). PEMs are often considered vital as a strategy for promoting health, educating and convincing people to adopt healthy lifestyles or increasing interest in screening (Garner, Ning and Francis 2011). PEMs are based on the belief that written educational materials help patients make informed decisions (Garner et al. 2011). The popularity of PEM can be illustrated by Dixon-Woods (2000) who, in a review of two national databases in Scotland and England, found 4 894 health-related PEMs produced by 1 013 different organisations (Gal and Prigat 2005). PEMs have been a topic of interest in many disciplines, for example in public health (DixonWoods 2001), medicine (Grime et al. 2007), education (Skelton 2001), nursing (O’Connor, Coates and O’Neill 2010) and for patients with a specific diagnosis, such as cancer (Asbury and Walsh 2005; Beaver and Booth 2007; O’Connor et al. 2010; Garner et al. 2011). Dixon-Woods (2001) analysed the reasons for using PEMs. The study exposed a patient education discourse, comprising PEMs as a substitute for expensive professional time to compensate for patients’ inadequacies and to provide patients with medically ‘correct’ knowledge in order to achieve cognitive, attitudinal and behavioural changes, such as improved patient compliance. Dixon-Woods (2001) also identified a patient empowerment discourse, in which the reason for using PEMs was related to the interests, needs and priorities of the patients themselves. PEMs were characterised by quality defects such as errors in content, meagre presentation, inappropriate tone and apparent bias (DixonWoods 2000). Other studies illuminate problems connected to PEMs, for example, that the content, writing style or organisation require rather high-level reading skills (Payne 2002). It is moreover claimed that PEMs are often based on the perspective of the healthcare professionals as divergent to that of the patients. There are consequently strong reasons for improving the quality of PEMs. Analysing discourses embedded in PEMs might be fruitful as a means of opening up new perspectives in their construction, thereby having the potential to influence health literacy. As language constructs and reconstructs reality (Derrida 1978; Potter and Wetherell 1987; Fairclough 1989; Winther J€ orgensen and Phillips 2000), exploring discourses is a way of illuminating values and norms inherent in the PEMs.
AIM This study aimed to explore and analyse discourses inherent in patient education materials produced by healthcare per© 2015 John Wiley & Sons Ltd
sonnel. For the purpose of illustration, PEMs constructed in the context of colon and rectum cancer surgery care were chosen.
METHODOLOGY Discourse analytic research Discourse refers to sets of meanings, concepts, descriptions, norms, values and statements that produce a certain version of experiences, events, objects and persons (Burr 1995). What people say and write are examples of discourses and at any particular moment, various discourses exist. The objective of discourse analysis is to explore language patterns. Discourse analysis considers phenomena as social constructions by attributing meaning to them in negotiation between individuals in a social context (Potter and Wetherell 1987; Winther J€ orgensen and Phillips 2000), or in a broader ‘macrostructural’ perspective (Fairclough 1989). The interweaving of words and phrases in different contexts gives the words their meaning (Kealley, Smith and Winser 2004). When we attempt to comprehend patterns in a text, we must do so against a cultural backdrop. The spoken and written words contribute to the construction and reconstruction of identities within social relationships (Potter and Wetherell 1987; Winther J€ orgensen and Phillips 2000; Crowe € 2005; Oresland et al. 2009). Thus, the subject ‘constructs’ itself discursively in specific positions dependent on discourse. These constructions are termed subject positions. The more an individual acts out the assumed subject position, the more likely it is to be socially accepted. The discourse analysis framework that guides the analysis in our study is embedded in Derrida’s approach to deconstruction (Derrida 1978). Deconstruction tries to show how a text carries contradictions that may be hidden at first sight (Whitehead 2010). That is, deconstruction is both an idea and a method to discover, recognise and understand underlying assumptions and thoughts that form the basis for ideas and social activities (Derrida 1978; Whitehead 2010). The main target of deconstruction is to disclose binary opposition, which is not about finding differences in the text but the rhetoric of oppositions based on an understanding that there is no correct or incorrect representation of reality, no absolute truth independent of discourses (Derrida 1982; Whitehead 2010). Meaning is constructed in structures of binary oppositions, the power relationship is enclosed, and the reality is divided. By separating and analysing pieces of text in relation to hidden values, deconstructionists try to illuminate and reduce the gap between binary oppositions € (Oresland et al. 2013). 241
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Sample and selection
FINDINGS
Hospital clinics in Sweden that perform over 35 colorectal cancer operations annually (based on reports to the national register for the specific diagnosis) were invited to provide written information sent to patients in 2010. The initial request was made by email and, if necessary, followed up by telephone calls and reminder emails. Twenty-eight clinics of 37 responded. In total, 190 documents were received. Only PEMs written by the healthcare personnel were included to find out their norms and values formulated in writing. Twenty-nine PEMs produced by external companies were excluded. The analysed material thus comprised 161 documents constituting a heterogeneous body of information: brochures related to disease prevention, oncological treatment, care procedures and rehabilitation issues. Treatment diaries, advice, instructions, counselling and guidelines related to physiotherapy, food and drug intake and hygiene were included. The included material also consisted of ‘welcome letters’ – announcements related to how, when and where the patients’ appointments, visits and care processes were planned. All materials were related to procedures and activities before, during and after the surgery care process and included images. The material most often consisted of a couple of pages, usually folded or bound, or a single page handout. As this study is part of a more comprehensive project, more detailed information about the sample and selection procedure is missing (Smith et al. 2014).
During the analysis, it became clear that the text embraced a biomedical discourse and a hospitality discourse. A biomedical discourse generally presupposes the world divided into objective and subjective information with a knowledge base built upon an assumption of science, medicine and health as rooted in objective facts. The biomedical discourse is a powerful discourse and often predominant in medical settings such as hospitals and health services. In the biomedical discourse that emerged in this study, the healthcare personnel’s subject positions appeared as ‘messengers’ of medical information and instructions, while that of the patient was ‘carrier’ of a diagnosis and recipient of biomedical information. However, a hospitality discourse also emerged in the analysis. A hospitality discourse can be described as the relationship between a guest and a host, or the act or practice of being hospitable. This includes the reception of guests, visitors or strangers. Hospitality also involves showing respect for one’s guests, providing for their needs and treating them as equals. The hospitality discourse embraced in the PEMs contained a welcoming approach, inviting the patients to come to the unit or ward. In the hospitality discourse, the healthcare personnel’s subject positions emerged as ‘hosts’, owners of a place, inviting and welcoming the patients appeared as the subject position ‘guest’.
Analysis
The biomedical discourse
An inductive approach was used to identify and distinguish discourses (Winther J€ orgensen and Phillips 2000; Taylor 2001) and subject positions. Initially, the PEMs were classified into clusters according to themes, concepts and content. This exploration was related to titles, concepts, terms and images, as proposed by Whitehead (2010). In this phase, discourses were disclosed (Table 1.) Next, the PEMs were re-read to identify subject positions through exploring and identifying binary oppositions. We looked for patterns of similarities and differences between binaries, thus marking sequences, words and sentences that were associated with each other, as proposed by Derrida (1982). In this study, the binary oppositions consisted of logical contradictions, that is, mutually exclusive terms (either/ or) or valuing and connecting terms (more-or-less) as pro€ posed by Oresland et al. (2009). In this way, tensions in the text become visible. To summarise, the analysing question was as follows: Which binary oppositions build the ‘chain of equivalence that constructs the subject positions? (Table 2).
The biomedical discourse in the PEMs gives a positivistic impression, indicated by a descriptive language that oscillated between different tenses and levels. It was impersonal, articulated in relation to empirical observations, medical evidence and science and described in medical terminology. The text was organised in chronological order as a care and treatment process with the assumption that the aim was ‘regression’ of and ‘recovery’ from the illness, that is becoming ‘normal’ again. Headings such as: ‘day of surgery’ – ‘surgery’ – ‘day after surgery’, ‘discharge’, ‘homecoming’ and subheadings including ‘pain management/treatment’ and ‘food and exercise’ illustrate the aim. In the biomedical discourse, two subject positions were found as follows: the messenger of medical information and the carrier of a diagnosis. The information, advice and instructions in the materials were constructed from the perspective of the healthcare personnel, the ‘messenger’. This subject position was based on the messenger’s authority and the recipient’s subordination. The messages in the PEMs
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Table 1 Examples of expressions and images in PEMs
Titles
Terms
Biomedical discourse
Hospitality discourse
Going for surgery at department X: Some advice about food intake if you are receiving chemotherapy Useful advice for stoma recipients Another tumour disease Gastrocenter Patient X-ray and EKG
Welcome! Welcome to our ward for care and treatment Relatives are welcome to call at any time There is soup for lunch Feel free to use your own clothes Please don’t hesitate to ask if you have any questions
Images
Table 2 Examples of subject positions, binary oppositions and chains of equivalence
Binary oppositions Binary oppositions
Subject position ‘Messenger’
Subject position ‘Carrier of diagnosis’
We, us ‘Host’ Welcome
Them, you ‘Guest’ Expected to come to
were addressed to ‘the carrier of a diagnosis’ about to undergo surgery, which implied inclusion in a group with the same diagnosis: cancer of the colon or rectum. In this way, the diagnosis created a polarity between the patients and the healthcare personnel. The two subject positions ‘messenger of medical information/instructions’ and ‘carrier of a diagnosis’ can be illustrated by binary oppositions such as: We, Us versus You, Technical jargon versus Ordinary language and Active versus Passive. WE, US VERSUS YOU
The terms ‘we’ and ‘us’ were related to the messenger’s affinity with being healthcare personnel. The term ‘you’ can be seen as addressing a message directly to a specific recipient (the patient), but also highlighted group belonging with other recipients: ‘Information for you as included in the follow-up program after bowel surgery’. © 2015 John Wiley & Sons Ltd
The designation ‘your’ or ‘one’ also highlighted the relationship between the messenger and the recipient of the messages. A relationship that was described as being in relation to ‘one doctor’ or ‘a doctor’ differed from ‘your doctor’: ‘You will receive information about this from your doctor’. As ‘your doctor’ could be anyone the patients had met in relation to their illness, and her/his name was not mentioned, it was impossible to know who ‘your doctor’ was. Thus, ‘your doctor’ implied a personal relationship between the patient and the physician that did not exist. Moreover, the title ‘gastrointestinal nurse’ implied a relationship between an intestinal bowel and a nurse as opposed to between human beings. When the PEMs were signed ‘surgeon’s office’ or ‘surgical department’, no healthcare personnel could be identified and held responsible for the content. MEDICAL/TECHNICAL TERMINOLOGY VERSUS EVERYDAY LANGUAGE
Both medical/technical terminology and everyday language were employed. Medical/technical terminology had a specialised content, such as technical terms used in diagnosis and explaining surgical and other medical interventions, as well as normal body functions. Text formulated in everyday language could appear obvious and/or fatuous and, as such, degrading to the carrier of a diagnosis, treated as incompetent and child-like: ‘Despite waking up, you are rather tired after the anaesthesia and want to go back to sleep’. The medical/technical terminology contained abbreviations, technical jargon and complex formulations that complicated 243
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otherwise simple concepts. Use of abbreviations reflected the power relationship between the healthcare personnel/messengers and the recipients/patients: ‘The ERAS concept [means] improved patient care. . ..’ As the messenger explained the meaning of the ERAS concept, the message could be interpreted to mean that the recipient is ignorant and the messenger knowledgeable. Sometimes, medical terms ‘popped up’ in the everyday language: ‘Swimming is allowed after the surgical clips [stitches] have been removed’. ACTIVE VERSUS PASSIVE
Patients and healthcare personnel were described differently. The patients were labelled as passive recipients of interventions planned by the active healthcare personnel: ‘The following is a brief description of what happens before and after your operation’. The healthcare personnel sometimes presupposed that patients would lack initiative for physical activity after a bowel operation. Although such an assumption was tacit, it was clear that it was the patients’ responsibility to activate themselves, as passivity could endanger recovery: ‘It’s important that you try to mobilize yourself. . . in that way you will recover more quickly’. The personnel’s descriptions focused on their tasks and examinations, which were presented as conscious actions, and portrayed themselves as active. Citations such as ‘. . .this is decided by the physician at your next visit’, highlight both who is in charge and active, and thereby who is not in charge and passive. Such differences can also be seen in the presentation of the body, sometimes illustrated as headless torsos with the diseased organ outlined and labelled with a diagnosis. Quotes such as ‘You are undergoing surgery of the colon due to polypus or a tumor’ were often used as an explanation related to an image of the body that required treatment and care by the active personnel. Giving permission and prohibition also indicated activity and led to the impression that the healthcare personnel had an active role:’You are allowed to eat until midnight on the day before the operation’ or ‘You may eat and drink as usual all day, unless your doctor decides differently’, which can be described as a prohibition and as a description of activity. In other cases, it was unclear who gave the permission, as this was occasionally implicit and the PEMs were rarely signed by an individual but by a group, for example: ‘Surgical department staff ‘or ‘From all of us at the lower gastro [department]’. Sometimes, not even a telephone number was provided. Sometimes, the patients had the opportunity to be active, if the physician permitted it: ‘Your doctor has 244
taken a position in your case, so you can take care of yourself in future treatment when symptoms occur’. This could be interpreted to mean that the patients not only had the possibility to do something, but could also do so by themselves – if they had permission.
The hospitality discourse The language in the hospitality discourse was both descriptive and normative. It was mostly ordinary, everyday language originating in a cultural ethos about hospitality. The hospitality discourse text was sparse, especially in relation to the subject position of ‘guest’. It was ceremonial in form, focusing on normative descriptions of rituals performed by hosts and guests in a place owned by the hosts. The text included headings such as: ‘Welcome to our X department’, ‘This is how we have planned your stay with us’. HOSTS VERSUS GUESTS
The starting point of the hospitality discourse was the subject position of host on the basis of ownership of the place, as well as authority and the subordination of the guest. The two subject positions ‘host’ and ‘guest’ can be illustrated by binary oppositions such as: welcome versus you are expected to come to; giving versus receiving; routines versus rituals illuminated the relationship between the host and the guest. WELCOME VERSUS EXPECTED TO COME TO
A common phrase in the PEMs was ‘Welcome to our X department’. Welcome from the healthcare personnel/ hosts to the patients/guests was a kind of invitation to ‘visit us’ at the hosts’ place, such as the hospital. It was a promise by the hosts to accommodate the guests and provide them with comfort, rest and care: ‘You are welcome to the X department at Y for care and treatment’, ‘We want you to feel that we will take good care of you’ and ‘We hope you will feel comfortable here with us’. ‘Welcome to our department’ can be contrasted with the phrase ‘you are expected to . . .’ that can be seen as an order from the hosts. This request or demand also implies that the guests should behave as expected and adjust to the routine of the host, speak their language and so on. The guests were invited by the hosts with a letter of welcome but also by a referral: ‘We have received a referral from your doctor and welcome you to the registration office on. . .’. GIVING VERSUS RECEIVING
The PEMs included utterances about hosts providing the guests with a bed, food, drink, service and information. This © 2015 John Wiley & Sons Ltd
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would seem to be an attempt to reassure the patients/guests that their stay would be as secure and comfortable as possible: ‘You will receive information and support that will make you feel secure’. It was also vital that the guest was informed about what would happen during the hospital stay, the intention being to involve them in the care and medical treatment, so that they would recover and become healthy as soon as possible. The PEMs also made clear that guests should be careful not to prolong their stay, except due to extraordinary circumstances: ‘If you are unwell or your body is not functioning as it should, you can of course remain on the ward’. Sometimes the host clearly indicated to the guests that it was time to leave: ‘Now it’s time to go home’. When the planned day of discharge arrived, the hosts often made a routine of implying that they were sorry the guests had to leave so soon: ‘Please feel free to call if you experience problems or have any questions. . .’. ROUTINES VERSUS RITUALS
Utterances such as ‘admission dialogue’ and ‘you will be admitted to a ward’ indicated that the hosts/healthcare personnel would assign the guests a ward. The admission procedure could be interpreted as a ritual/ceremony that formalised the housing of the guests. First, the host would ask questions to identify the guest: ‘What is your name?’ ‘Where do you come from?’ and ‘What would you like for dinner?’ Second, the host might mention restrictions on the guest: ‘As our guest, you must adapt to our routines’. Moreover, the phrases: ‘You will be in ward x’, ‘You are welcome and will be assigned a ward’ imply that the guest was assigned a bed on the ward, which, along with a locker, was regarded as the guest’s private space: ‘You will have a bed and a lockable cabinet. . .. You can have a telephone connection beside your bed’. An utterance such as ‘Welcome to admission and registration’ can be seen as an expression indicating the start of a ritual designed by the hosts that often consisted of routines listed as bullet points. The text below is an example of such a list related to personal hygiene: ‘Shower and wash your hair with ordinary shampoo’, ‘Clean your navel carefully with Q-tips’, ‘Put on clean clothes after showering’. Sometimes, invitations to eat or drink were also formulated as routines: ‘Snacks and nutrient-rich drinks are available on a 24-hour basis. These items can be found in the fridge in the dining room.’ Term such as ‘discharge from’ indicated that when their stay was over, guests would be ceremoniously ‘discharged after approximately x days’. To be discharged from the ward, a host – the head of the household, the doctor, had to con© 2015 John Wiley & Sons Ltd
sent: ‘You will be discharged by a doctor’. Certain physical conditions would therefore have to be met before the host consented discharge because, as the head of the household, she/he was formally and morally responsible for the guest. However, these responsibilities were related to physical conditions: ‘You will be discharged by a doctor when the pain relief works.’
DISCUSSION In the analysis, two discourses were found: a biomedical discourse and a discourse of hospitality. This study showed a biomedical discourse that can be seen as a positivistic approach, including a notion that language depicts reality and that truth about facts can be described and mediated by healthcare personnel to the recipients, the patients. The biomedical discourse can also be seen as normative, value laden and imperative and be interpreted as loaded with intentions to persuade and influence the patients. The biomedical discourse indicated that healthcare personnel and patients were positioned as unequal. Such findings are well documented in other studies (Bensing 2000; Dixon-Woods 2001). In the present study, healthcare personnel were constructed and positioned as messengers – as mind-reading and competent medical authorities. The healthcare personnel also restricted and constrained the patients while constructing themselves as ethical experts. This finding can be compared to the assumption by Kealley et al. (2004) that PEMs might empower the sender, as opposed to the recipients of the text. The patients were furthermore constructed as the carriers of a diagnosis, belonging to a collective with the same diagnosis, and as physical objects: passive, irresponsible and ignorant. Like DixonWoods (2001), the biomedical discourse in the PEMs might be seen an expression of paternalism. The subject position, that is the carrier of diagnosis, inherent in the biomedical discourse, was constructed on a basis of bodily similarity. Although the patient body was present and presented as an organism with a corporal disease, the body was surprisingly absent. It might seem paradoxical that the body is absent in a text about a physical condition. However, biological sex and age were concealed, and the body was presented as an abstraction. The body was constructed as having neither a social embodiment, nor life history, nor ability to make decisions about its own health care. Interestingly, the analysis also revealed a deconstructivist discourse of hospitality. According to Derrida and Caputo (2003), deconstruction can be divided into two parts: literary and philosophical. The literary part concerns textual analysis, where creating is decisive for finding additional hidden 245
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meanings by revealing discrepancies, tensions and the heter€ ogeneity of a text (Oresland et al. 2013). For example, the word ‘welcome’ in the leaflets can be interpreted as coming from a host inviting the recipient of the text to be a guest. The philosophical aspect involves the central intention of deconstruction, metaphysics, which according to Caputo and Derrida (2003), involves hospitality and infinite openness to the ‘Other’. In line with this, the relationship in the hospitality discourse between healthcare personnel and patients was constructed as informal and private, where the host welcomed the guest and acknowledged the person behind the diagnosis. According to Derrida and Caputo (2003), a hospitality discourse can be interpreted as grounded in an asymmetrical relationship. An essential aspect of Derrida’s philosophy of hospitality is the fact that the welcome extended to the guest is a function of the power of the host to maintain mastery of the property, that is the hospital. The idea of having and retaining mastery underlies hospitality. That is, even though the personnel do not ‘own’ the place in an original sense, they act as its representatives, the asymmetrical relationship indicating that the patients ought to behave as invited guests in accordance with accepted values and norms, treating the healthcare personnel/hosts with respect and not obstructing or complaining. Hospitality can, however, be seen as a conditional € exchange or as reciprocal hospitality (Oresland et al. 2013). Seen as conditional exchange, the healthcare personnel/ hosts offer treatment and care, accommodation and services, whereas the guest/patient receives the benefits of the hospitality and repays with obedience and respect. Conditional exchange can be interpreted as a payback relationship. Hospitality seen as reciprocal hospitality builds on mutual humility, respect and confidence (Bensing 2000; € Oresland et al. 2013). Reciprocity positions the host and the guest in a horizontal relationship, where both can mutually thrive and prosper and treat each other with dignity. Unlike a conditional exchange, reciprocal hospitality is born out of caring for each other – despite dissimilarities in position.
What’s in it for PEMs? Previously it has been revealed that healthcare personnel might overestimate the healthcare literacy of the patients (Verkissen et al. 2014). Our study shows that, when producing or revising PEMs, personnel need to be aware of which discourse is presented in their work. We suggest that if the PEM aims to address a medical condition or disease, it might be more explicitly adapted to the biomedical discourse. As seeking of medical information on the internet 246
by patients seems to be extensive, this suggestion might be motivated (Jordan, Buchbinder and Osborne 2010). If the PEMs explicitly aim to enhance hospitality in health care, personnel may need to be aware of how to articulate hospitality and welcome the patients in a more conscious way. As we see it, the hospitality discourse also needs to be revised and developed, in particular with respect to linked relationbuilding aspects. If based on the notion of hospitality where the starting point is the other, the patient, the hospitality discourse has the potential of promoting PEMs. Hospitality discourse is related to the interests, needs and priorities of patients themselves, as well as those of the professionals. Based on such a notion on hospitality, PEMs can be related to the etymological meaning of communicare – to share. As hospitality means inviting the ‘other’, the hospitality discourse can promote a dialogue built on reciprocal exchange and confidence. Further, the PEMs would be considerably improved if the tendency to use power expressions was eliminated. Both the biomedical discourse and the hospitality discourse were flawed by such tendencies, shown by the use of discourse analysis and deconstruction contradiction of binary oppositions. The use of binary opposition, between patients assigned to a group ‘you’ and the personnel ‘we’, active and passive, responsible and irresponsible, permission and prohibition, giving and receiving, routines and rituals were also disclosed. One suggestion for tackling power expressions therefore is that constructions of PEMs should consider how, when and why such oppositions construct the relationship between the constructor/the health personnel and the receiver of the text. Other pitfalls also afflicted the two discourses highlighted in this study. In line with Dixon-Woods (2001), the PEMs based on the biomedical discourse constitute one-way communication. Another example was the biomedical discourse conveying a view of the patients as ignorant. Visualising healthcare personnel’s inherent assumptions about patients’ knowledge and understanding is essential. It is important to acknowledge that even if the patients are medically ignorant and seek medical knowledge, this does not mean that they are ignorant in other areas. We therefore suggest that PEMs be improved by customising the information, better adapting it to person-centred care by making it diagnosis-centred, reflective of prohibitions and supportive of the concept of patient-centred care.
Methodological considerations This study has some limitations. One example concerns translation issues. The translation of words and concepts © 2015 John Wiley & Sons Ltd
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from Swedish to English was tricky at times. For example, to give permission or to prohibit were expressed by the Swedish word f a r respective f a r inte which can be compared to the English may and respectively may not. This highlights the question that translation is problematic. However, in this study, we consider the translational issues relate to a deconstructivist approach (Derrida 1978, 1982; Derrida and Caputo 2003). Accordingly, translation is a means of releasing interpretation of text, partly to find any hidden assumptions therein and partly to provide text with meaning by placing it in a new context. A starting point, according to Derrida (1978), is that language, cultures and societies are always changing. That is why it is not possible to conclude that a certain word or a specific text has a fixed meaning or always refers to a specific word or thing outside the text (i.e. in reality).
CONCLUSION It has previously been stated that PEMs have the potential to substantially improve health literacy. In our view, the discourses disclosed in this study, both the biomedical discourse and the hospitality discourse, are pivotal in such an endeavour. When an individual is affected by a disease, information on care and treatment is important personally both to patients and their significant others. Likewise, it is crucial for patients to know that they are welcomed into health care. Tinges of paternalism inherent in PEMs nevertheless need to be critically considered and removed, thus substantially improving readability and suitability, which in turn would stimulate and motivate patients in their own self-care and learning. Further, a clarification of the discourses involved in PEMs would be of special significance in fostering a critical reflective stance among professionals regarding power and paternalism inherent in healthcare communication.
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O’Connor G, V Coates and S O’Neill. 2010. Exploring the information needs of patients with cancer of the rectum. European Journal of Oncology Nursing 14: 271–7. € Oresland S, S M€a€att€a, A Norberg and K L€ utzen. 2009. Patients as “safeguards” and nurses as “substitutes:” A discourse analysis. Nursing Ethics 16: 219–30. € Oresland S, K L€ utzen, A Norberg, BH Rasmussen and S M€a€att€a. 2013. Nurses as ‘guests’: A study of a concept in light of Jacques Derrida’s philosophy of hospitality. Nursing Philosophy 13: 117–26. Payne SA. 2002. Balancing information needs: Dilemmas in producing patient information leaflets. Health Informatics Journal 8: 174–9. Potter J and M Wetherell. 1987. Discourse and social psychology: Beyond attitudes and behaviour. London: Sage. Skelton A. 2001. Evolution not revolution? The struggle for the recognition and development of patient education in the UK. Patient Education and Counselling 44: 23–7. Smith F, E Carlsson, D Kokkinakkis, M Forsberg, K Kodeda, R Sawatsky, et al. 2014. Readability, suitability and com-
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Feature
Disclosing discourses: biomedical and hospitality discourses in patient education materials € € a,b Febe Friberg,b,c Sylvia M€ b,e Stina Oresland, a€att€ab,d and Joakim Ohlen b and Vestfold University College, Drammen, Norway, University of Gothenburg Centre for Person-Centred Care, Gothenburg, Sweden, cUniversity of Stavanger, Stavanger, Norway, dCentre for Equity in Health Care/Institute of Ersta Sk€ondal University College and Ersta Hospital, Stockholm, Sweden, eThe Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden aBuskerud
Accepted for publication 24 February 2015 DOI: 10.1111/nin.12097 € € ATT € A € S and OHLEN € ORESLAND S, FRIBERG F, MA J. Nursing Inquiry 2015; 22: 240–248 Disclosing discourses: biomedical and hospitality discourses in patient education materials Patient education materials have the potential to strengthen the health literacy of patients. Previous studies indicate that readability and suitability may be improved. The aim of this study was to explore and analyze discourses inherent in patient education materials since analysis of discourses could illuminate values and norms inherent in them. Clinics in Sweden that provided colorectal cancer surgery allowed access to written information and ‘welcome letters’ sent to patients. The material was analysed by means of discourse analysis, embedded in Derrida’s approach of deconstruction. The analysis revealed a biomedical discourse and a hospitality discourse. In the biomedical discourse, the subject position of the personnel was interpreted as the messenger of medical information while that of the patients as the carrier of diagnoses and recipients of biomedical information. In the hospitality discourse, the subject position of the personnel was interpreted as hosts who invite and welcome the patients as guests. The study highlights the need to eliminate paternalism and fosters a critical reflective stance among professionals regarding power and paternalism inherent in health care communication. Key words: deconstruction, discourse, health literacy, patient education materials, qualitative study.
In clinical contexts, appropriate information regarding diagnosis, long-term and care services conditions could prove vital for patients suffering from various diseases (Verkissen et al. 2014). Proper information may be a prerequisite to give patients opportunities to form informed decisions, lower levels of distress and increase patient satisfaction (Gal and Prigat 2005). However, the use of information depends on many factors, for example, language and health literacy may have an influence (Gal and Prigat 2005). There are many definitions of health literacy, but we refer to Berkman, Davis and McGormack (2010) who denote health literacy as € Correspondence: Stina Oresland, RN, PhD, Senior Lecture, Department of Health Sciences, Buskerud and Vestfold University College, Postboks 7053 3007 Drammen, Norway. E-mail:
knowledge and competencies to access, understand, appraise and apply information regarding health or diseases. Central to health literacy is the question of the individuals’ ability to acquire, understand and use information in order to maintain, promote or improve health (Berkman et al. 2010; M artensson and Hensing 2011). However, conditions for health literacy are not only related to individual capabilities, but also to the individual’s access to available, relevant and reliable information (Hill 2007; Nutbeam 2008; Berkman et al. 2010; M artensson and Hensing 2011). Given such a background, the quality, readability and usefulness of patient information are crucial (Smith et al. 2014). Patient education material (PEM) is a generic term used for written information, advice and counselling given to patients and relatives about medical conditions, available © 2015 John Wiley & Sons Ltd
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services, treatments and care procedures. They are intended as a complement to oral information (Helitzer et al. 2009). PEMs are often considered vital as a strategy for promoting health, educating and convincing people to adopt healthy lifestyles or increasing interest in screening (Garner, Ning and Francis 2011). PEMs are based on the belief that written educational materials help patients make informed decisions (Garner et al. 2011). The popularity of PEM can be illustrated by Dixon-Woods (2000) who, in a review of two national databases in Scotland and England, found 4 894 health-related PEMs produced by 1 013 different organisations (Gal and Prigat 2005). PEMs have been a topic of interest in many disciplines, for example in public health (DixonWoods 2001), medicine (Grime et al. 2007), education (Skelton 2001), nursing (O’Connor, Coates and O’Neill 2010) and for patients with a specific diagnosis, such as cancer (Asbury and Walsh 2005; Beaver and Booth 2007; O’Connor et al. 2010; Garner et al. 2011). Dixon-Woods (2001) analysed the reasons for using PEMs. The study exposed a patient education discourse, comprising PEMs as a substitute for expensive professional time to compensate for patients’ inadequacies and to provide patients with medically ‘correct’ knowledge in order to achieve cognitive, attitudinal and behavioural changes, such as improved patient compliance. Dixon-Woods (2001) also identified a patient empowerment discourse, in which the reason for using PEMs was related to the interests, needs and priorities of the patients themselves. PEMs were characterised by quality defects such as errors in content, meagre presentation, inappropriate tone and apparent bias (DixonWoods 2000). Other studies illuminate problems connected to PEMs, for example, that the content, writing style or organisation require rather high-level reading skills (Payne 2002). It is moreover claimed that PEMs are often based on the perspective of the healthcare professionals as divergent to that of the patients. There are consequently strong reasons for improving the quality of PEMs. Analysing discourses embedded in PEMs might be fruitful as a means of opening up new perspectives in their construction, thereby having the potential to influence health literacy. As language constructs and reconstructs reality (Derrida 1978; Potter and Wetherell 1987; Fairclough 1989; Winther J€ orgensen and Phillips 2000), exploring discourses is a way of illuminating values and norms inherent in the PEMs.
AIM This study aimed to explore and analyse discourses inherent in patient education materials produced by healthcare per© 2015 John Wiley & Sons Ltd
sonnel. For the purpose of illustration, PEMs constructed in the context of colon and rectum cancer surgery care were chosen.
METHODOLOGY Discourse analytic research Discourse refers to sets of meanings, concepts, descriptions, norms, values and statements that produce a certain version of experiences, events, objects and persons (Burr 1995). What people say and write are examples of discourses and at any particular moment, various discourses exist. The objective of discourse analysis is to explore language patterns. Discourse analysis considers phenomena as social constructions by attributing meaning to them in negotiation between individuals in a social context (Potter and Wetherell 1987; Winther J€ orgensen and Phillips 2000), or in a broader ‘macrostructural’ perspective (Fairclough 1989). The interweaving of words and phrases in different contexts gives the words their meaning (Kealley, Smith and Winser 2004). When we attempt to comprehend patterns in a text, we must do so against a cultural backdrop. The spoken and written words contribute to the construction and reconstruction of identities within social relationships (Potter and Wetherell 1987; Winther J€ orgensen and Phillips 2000; Crowe € 2005; Oresland et al. 2009). Thus, the subject ‘constructs’ itself discursively in specific positions dependent on discourse. These constructions are termed subject positions. The more an individual acts out the assumed subject position, the more likely it is to be socially accepted. The discourse analysis framework that guides the analysis in our study is embedded in Derrida’s approach to deconstruction (Derrida 1978). Deconstruction tries to show how a text carries contradictions that may be hidden at first sight (Whitehead 2010). That is, deconstruction is both an idea and a method to discover, recognise and understand underlying assumptions and thoughts that form the basis for ideas and social activities (Derrida 1978; Whitehead 2010). The main target of deconstruction is to disclose binary opposition, which is not about finding differences in the text but the rhetoric of oppositions based on an understanding that there is no correct or incorrect representation of reality, no absolute truth independent of discourses (Derrida 1982; Whitehead 2010). Meaning is constructed in structures of binary oppositions, the power relationship is enclosed, and the reality is divided. By separating and analysing pieces of text in relation to hidden values, deconstructionists try to illuminate and reduce the gap between binary oppositions € (Oresland et al. 2013). 241
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Sample and selection
FINDINGS
Hospital clinics in Sweden that perform over 35 colorectal cancer operations annually (based on reports to the national register for the specific diagnosis) were invited to provide written information sent to patients in 2010. The initial request was made by email and, if necessary, followed up by telephone calls and reminder emails. Twenty-eight clinics of 37 responded. In total, 190 documents were received. Only PEMs written by the healthcare personnel were included to find out their norms and values formulated in writing. Twenty-nine PEMs produced by external companies were excluded. The analysed material thus comprised 161 documents constituting a heterogeneous body of information: brochures related to disease prevention, oncological treatment, care procedures and rehabilitation issues. Treatment diaries, advice, instructions, counselling and guidelines related to physiotherapy, food and drug intake and hygiene were included. The included material also consisted of ‘welcome letters’ – announcements related to how, when and where the patients’ appointments, visits and care processes were planned. All materials were related to procedures and activities before, during and after the surgery care process and included images. The material most often consisted of a couple of pages, usually folded or bound, or a single page handout. As this study is part of a more comprehensive project, more detailed information about the sample and selection procedure is missing (Smith et al. 2014).
During the analysis, it became clear that the text embraced a biomedical discourse and a hospitality discourse. A biomedical discourse generally presupposes the world divided into objective and subjective information with a knowledge base built upon an assumption of science, medicine and health as rooted in objective facts. The biomedical discourse is a powerful discourse and often predominant in medical settings such as hospitals and health services. In the biomedical discourse that emerged in this study, the healthcare personnel’s subject positions appeared as ‘messengers’ of medical information and instructions, while that of the patient was ‘carrier’ of a diagnosis and recipient of biomedical information. However, a hospitality discourse also emerged in the analysis. A hospitality discourse can be described as the relationship between a guest and a host, or the act or practice of being hospitable. This includes the reception of guests, visitors or strangers. Hospitality also involves showing respect for one’s guests, providing for their needs and treating them as equals. The hospitality discourse embraced in the PEMs contained a welcoming approach, inviting the patients to come to the unit or ward. In the hospitality discourse, the healthcare personnel’s subject positions emerged as ‘hosts’, owners of a place, inviting and welcoming the patients appeared as the subject position ‘guest’.
Analysis
The biomedical discourse
An inductive approach was used to identify and distinguish discourses (Winther J€ orgensen and Phillips 2000; Taylor 2001) and subject positions. Initially, the PEMs were classified into clusters according to themes, concepts and content. This exploration was related to titles, concepts, terms and images, as proposed by Whitehead (2010). In this phase, discourses were disclosed (Table 1.) Next, the PEMs were re-read to identify subject positions through exploring and identifying binary oppositions. We looked for patterns of similarities and differences between binaries, thus marking sequences, words and sentences that were associated with each other, as proposed by Derrida (1982). In this study, the binary oppositions consisted of logical contradictions, that is, mutually exclusive terms (either/ or) or valuing and connecting terms (more-or-less) as pro€ posed by Oresland et al. (2009). In this way, tensions in the text become visible. To summarise, the analysing question was as follows: Which binary oppositions build the ‘chain of equivalence that constructs the subject positions? (Table 2).
The biomedical discourse in the PEMs gives a positivistic impression, indicated by a descriptive language that oscillated between different tenses and levels. It was impersonal, articulated in relation to empirical observations, medical evidence and science and described in medical terminology. The text was organised in chronological order as a care and treatment process with the assumption that the aim was ‘regression’ of and ‘recovery’ from the illness, that is becoming ‘normal’ again. Headings such as: ‘day of surgery’ – ‘surgery’ – ‘day after surgery’, ‘discharge’, ‘homecoming’ and subheadings including ‘pain management/treatment’ and ‘food and exercise’ illustrate the aim. In the biomedical discourse, two subject positions were found as follows: the messenger of medical information and the carrier of a diagnosis. The information, advice and instructions in the materials were constructed from the perspective of the healthcare personnel, the ‘messenger’. This subject position was based on the messenger’s authority and the recipient’s subordination. The messages in the PEMs
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Table 1 Examples of expressions and images in PEMs
Titles
Terms
Biomedical discourse
Hospitality discourse
Going for surgery at department X: Some advice about food intake if you are receiving chemotherapy Useful advice for stoma recipients Another tumour disease Gastrocenter Patient X-ray and EKG
Welcome! Welcome to our ward for care and treatment Relatives are welcome to call at any time There is soup for lunch Feel free to use your own clothes Please don’t hesitate to ask if you have any questions
Images
Table 2 Examples of subject positions, binary oppositions and chains of equivalence
Binary oppositions Binary oppositions
Subject position ‘Messenger’
Subject position ‘Carrier of diagnosis’
We, us ‘Host’ Welcome
Them, you ‘Guest’ Expected to come to
were addressed to ‘the carrier of a diagnosis’ about to undergo surgery, which implied inclusion in a group with the same diagnosis: cancer of the colon or rectum. In this way, the diagnosis created a polarity between the patients and the healthcare personnel. The two subject positions ‘messenger of medical information/instructions’ and ‘carrier of a diagnosis’ can be illustrated by binary oppositions such as: We, Us versus You, Technical jargon versus Ordinary language and Active versus Passive. WE, US VERSUS YOU
The terms ‘we’ and ‘us’ were related to the messenger’s affinity with being healthcare personnel. The term ‘you’ can be seen as addressing a message directly to a specific recipient (the patient), but also highlighted group belonging with other recipients: ‘Information for you as included in the follow-up program after bowel surgery’. © 2015 John Wiley & Sons Ltd
The designation ‘your’ or ‘one’ also highlighted the relationship between the messenger and the recipient of the messages. A relationship that was described as being in relation to ‘one doctor’ or ‘a doctor’ differed from ‘your doctor’: ‘You will receive information about this from your doctor’. As ‘your doctor’ could be anyone the patients had met in relation to their illness, and her/his name was not mentioned, it was impossible to know who ‘your doctor’ was. Thus, ‘your doctor’ implied a personal relationship between the patient and the physician that did not exist. Moreover, the title ‘gastrointestinal nurse’ implied a relationship between an intestinal bowel and a nurse as opposed to between human beings. When the PEMs were signed ‘surgeon’s office’ or ‘surgical department’, no healthcare personnel could be identified and held responsible for the content. MEDICAL/TECHNICAL TERMINOLOGY VERSUS EVERYDAY LANGUAGE
Both medical/technical terminology and everyday language were employed. Medical/technical terminology had a specialised content, such as technical terms used in diagnosis and explaining surgical and other medical interventions, as well as normal body functions. Text formulated in everyday language could appear obvious and/or fatuous and, as such, degrading to the carrier of a diagnosis, treated as incompetent and child-like: ‘Despite waking up, you are rather tired after the anaesthesia and want to go back to sleep’. The medical/technical terminology contained abbreviations, technical jargon and complex formulations that complicated 243
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otherwise simple concepts. Use of abbreviations reflected the power relationship between the healthcare personnel/messengers and the recipients/patients: ‘The ERAS concept [means] improved patient care. . ..’ As the messenger explained the meaning of the ERAS concept, the message could be interpreted to mean that the recipient is ignorant and the messenger knowledgeable. Sometimes, medical terms ‘popped up’ in the everyday language: ‘Swimming is allowed after the surgical clips [stitches] have been removed’. ACTIVE VERSUS PASSIVE
Patients and healthcare personnel were described differently. The patients were labelled as passive recipients of interventions planned by the active healthcare personnel: ‘The following is a brief description of what happens before and after your operation’. The healthcare personnel sometimes presupposed that patients would lack initiative for physical activity after a bowel operation. Although such an assumption was tacit, it was clear that it was the patients’ responsibility to activate themselves, as passivity could endanger recovery: ‘It’s important that you try to mobilize yourself. . . in that way you will recover more quickly’. The personnel’s descriptions focused on their tasks and examinations, which were presented as conscious actions, and portrayed themselves as active. Citations such as ‘. . .this is decided by the physician at your next visit’, highlight both who is in charge and active, and thereby who is not in charge and passive. Such differences can also be seen in the presentation of the body, sometimes illustrated as headless torsos with the diseased organ outlined and labelled with a diagnosis. Quotes such as ‘You are undergoing surgery of the colon due to polypus or a tumor’ were often used as an explanation related to an image of the body that required treatment and care by the active personnel. Giving permission and prohibition also indicated activity and led to the impression that the healthcare personnel had an active role:’You are allowed to eat until midnight on the day before the operation’ or ‘You may eat and drink as usual all day, unless your doctor decides differently’, which can be described as a prohibition and as a description of activity. In other cases, it was unclear who gave the permission, as this was occasionally implicit and the PEMs were rarely signed by an individual but by a group, for example: ‘Surgical department staff ‘or ‘From all of us at the lower gastro [department]’. Sometimes, not even a telephone number was provided. Sometimes, the patients had the opportunity to be active, if the physician permitted it: ‘Your doctor has 244
taken a position in your case, so you can take care of yourself in future treatment when symptoms occur’. This could be interpreted to mean that the patients not only had the possibility to do something, but could also do so by themselves – if they had permission.
The hospitality discourse The language in the hospitality discourse was both descriptive and normative. It was mostly ordinary, everyday language originating in a cultural ethos about hospitality. The hospitality discourse text was sparse, especially in relation to the subject position of ‘guest’. It was ceremonial in form, focusing on normative descriptions of rituals performed by hosts and guests in a place owned by the hosts. The text included headings such as: ‘Welcome to our X department’, ‘This is how we have planned your stay with us’. HOSTS VERSUS GUESTS
The starting point of the hospitality discourse was the subject position of host on the basis of ownership of the place, as well as authority and the subordination of the guest. The two subject positions ‘host’ and ‘guest’ can be illustrated by binary oppositions such as: welcome versus you are expected to come to; giving versus receiving; routines versus rituals illuminated the relationship between the host and the guest. WELCOME VERSUS EXPECTED TO COME TO
A common phrase in the PEMs was ‘Welcome to our X department’. Welcome from the healthcare personnel/ hosts to the patients/guests was a kind of invitation to ‘visit us’ at the hosts’ place, such as the hospital. It was a promise by the hosts to accommodate the guests and provide them with comfort, rest and care: ‘You are welcome to the X department at Y for care and treatment’, ‘We want you to feel that we will take good care of you’ and ‘We hope you will feel comfortable here with us’. ‘Welcome to our department’ can be contrasted with the phrase ‘you are expected to . . .’ that can be seen as an order from the hosts. This request or demand also implies that the guests should behave as expected and adjust to the routine of the host, speak their language and so on. The guests were invited by the hosts with a letter of welcome but also by a referral: ‘We have received a referral from your doctor and welcome you to the registration office on. . .’. GIVING VERSUS RECEIVING
The PEMs included utterances about hosts providing the guests with a bed, food, drink, service and information. This © 2015 John Wiley & Sons Ltd
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would seem to be an attempt to reassure the patients/guests that their stay would be as secure and comfortable as possible: ‘You will receive information and support that will make you feel secure’. It was also vital that the guest was informed about what would happen during the hospital stay, the intention being to involve them in the care and medical treatment, so that they would recover and become healthy as soon as possible. The PEMs also made clear that guests should be careful not to prolong their stay, except due to extraordinary circumstances: ‘If you are unwell or your body is not functioning as it should, you can of course remain on the ward’. Sometimes the host clearly indicated to the guests that it was time to leave: ‘Now it’s time to go home’. When the planned day of discharge arrived, the hosts often made a routine of implying that they were sorry the guests had to leave so soon: ‘Please feel free to call if you experience problems or have any questions. . .’. ROUTINES VERSUS RITUALS
Utterances such as ‘admission dialogue’ and ‘you will be admitted to a ward’ indicated that the hosts/healthcare personnel would assign the guests a ward. The admission procedure could be interpreted as a ritual/ceremony that formalised the housing of the guests. First, the host would ask questions to identify the guest: ‘What is your name?’ ‘Where do you come from?’ and ‘What would you like for dinner?’ Second, the host might mention restrictions on the guest: ‘As our guest, you must adapt to our routines’. Moreover, the phrases: ‘You will be in ward x’, ‘You are welcome and will be assigned a ward’ imply that the guest was assigned a bed on the ward, which, along with a locker, was regarded as the guest’s private space: ‘You will have a bed and a lockable cabinet. . .. You can have a telephone connection beside your bed’. An utterance such as ‘Welcome to admission and registration’ can be seen as an expression indicating the start of a ritual designed by the hosts that often consisted of routines listed as bullet points. The text below is an example of such a list related to personal hygiene: ‘Shower and wash your hair with ordinary shampoo’, ‘Clean your navel carefully with Q-tips’, ‘Put on clean clothes after showering’. Sometimes, invitations to eat or drink were also formulated as routines: ‘Snacks and nutrient-rich drinks are available on a 24-hour basis. These items can be found in the fridge in the dining room.’ Term such as ‘discharge from’ indicated that when their stay was over, guests would be ceremoniously ‘discharged after approximately x days’. To be discharged from the ward, a host – the head of the household, the doctor, had to con© 2015 John Wiley & Sons Ltd
sent: ‘You will be discharged by a doctor’. Certain physical conditions would therefore have to be met before the host consented discharge because, as the head of the household, she/he was formally and morally responsible for the guest. However, these responsibilities were related to physical conditions: ‘You will be discharged by a doctor when the pain relief works.’
DISCUSSION In the analysis, two discourses were found: a biomedical discourse and a discourse of hospitality. This study showed a biomedical discourse that can be seen as a positivistic approach, including a notion that language depicts reality and that truth about facts can be described and mediated by healthcare personnel to the recipients, the patients. The biomedical discourse can also be seen as normative, value laden and imperative and be interpreted as loaded with intentions to persuade and influence the patients. The biomedical discourse indicated that healthcare personnel and patients were positioned as unequal. Such findings are well documented in other studies (Bensing 2000; Dixon-Woods 2001). In the present study, healthcare personnel were constructed and positioned as messengers – as mind-reading and competent medical authorities. The healthcare personnel also restricted and constrained the patients while constructing themselves as ethical experts. This finding can be compared to the assumption by Kealley et al. (2004) that PEMs might empower the sender, as opposed to the recipients of the text. The patients were furthermore constructed as the carriers of a diagnosis, belonging to a collective with the same diagnosis, and as physical objects: passive, irresponsible and ignorant. Like DixonWoods (2001), the biomedical discourse in the PEMs might be seen an expression of paternalism. The subject position, that is the carrier of diagnosis, inherent in the biomedical discourse, was constructed on a basis of bodily similarity. Although the patient body was present and presented as an organism with a corporal disease, the body was surprisingly absent. It might seem paradoxical that the body is absent in a text about a physical condition. However, biological sex and age were concealed, and the body was presented as an abstraction. The body was constructed as having neither a social embodiment, nor life history, nor ability to make decisions about its own health care. Interestingly, the analysis also revealed a deconstructivist discourse of hospitality. According to Derrida and Caputo (2003), deconstruction can be divided into two parts: literary and philosophical. The literary part concerns textual analysis, where creating is decisive for finding additional hidden 245
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meanings by revealing discrepancies, tensions and the heter€ ogeneity of a text (Oresland et al. 2013). For example, the word ‘welcome’ in the leaflets can be interpreted as coming from a host inviting the recipient of the text to be a guest. The philosophical aspect involves the central intention of deconstruction, metaphysics, which according to Caputo and Derrida (2003), involves hospitality and infinite openness to the ‘Other’. In line with this, the relationship in the hospitality discourse between healthcare personnel and patients was constructed as informal and private, where the host welcomed the guest and acknowledged the person behind the diagnosis. According to Derrida and Caputo (2003), a hospitality discourse can be interpreted as grounded in an asymmetrical relationship. An essential aspect of Derrida’s philosophy of hospitality is the fact that the welcome extended to the guest is a function of the power of the host to maintain mastery of the property, that is the hospital. The idea of having and retaining mastery underlies hospitality. That is, even though the personnel do not ‘own’ the place in an original sense, they act as its representatives, the asymmetrical relationship indicating that the patients ought to behave as invited guests in accordance with accepted values and norms, treating the healthcare personnel/hosts with respect and not obstructing or complaining. Hospitality can, however, be seen as a conditional € exchange or as reciprocal hospitality (Oresland et al. 2013). Seen as conditional exchange, the healthcare personnel/ hosts offer treatment and care, accommodation and services, whereas the guest/patient receives the benefits of the hospitality and repays with obedience and respect. Conditional exchange can be interpreted as a payback relationship. Hospitality seen as reciprocal hospitality builds on mutual humility, respect and confidence (Bensing 2000; € Oresland et al. 2013). Reciprocity positions the host and the guest in a horizontal relationship, where both can mutually thrive and prosper and treat each other with dignity. Unlike a conditional exchange, reciprocal hospitality is born out of caring for each other – despite dissimilarities in position.
What’s in it for PEMs? Previously it has been revealed that healthcare personnel might overestimate the healthcare literacy of the patients (Verkissen et al. 2014). Our study shows that, when producing or revising PEMs, personnel need to be aware of which discourse is presented in their work. We suggest that if the PEM aims to address a medical condition or disease, it might be more explicitly adapted to the biomedical discourse. As seeking of medical information on the internet 246
by patients seems to be extensive, this suggestion might be motivated (Jordan, Buchbinder and Osborne 2010). If the PEMs explicitly aim to enhance hospitality in health care, personnel may need to be aware of how to articulate hospitality and welcome the patients in a more conscious way. As we see it, the hospitality discourse also needs to be revised and developed, in particular with respect to linked relationbuilding aspects. If based on the notion of hospitality where the starting point is the other, the patient, the hospitality discourse has the potential of promoting PEMs. Hospitality discourse is related to the interests, needs and priorities of patients themselves, as well as those of the professionals. Based on such a notion on hospitality, PEMs can be related to the etymological meaning of communicare – to share. As hospitality means inviting the ‘other’, the hospitality discourse can promote a dialogue built on reciprocal exchange and confidence. Further, the PEMs would be considerably improved if the tendency to use power expressions was eliminated. Both the biomedical discourse and the hospitality discourse were flawed by such tendencies, shown by the use of discourse analysis and deconstruction contradiction of binary oppositions. The use of binary opposition, between patients assigned to a group ‘you’ and the personnel ‘we’, active and passive, responsible and irresponsible, permission and prohibition, giving and receiving, routines and rituals were also disclosed. One suggestion for tackling power expressions therefore is that constructions of PEMs should consider how, when and why such oppositions construct the relationship between the constructor/the health personnel and the receiver of the text. Other pitfalls also afflicted the two discourses highlighted in this study. In line with Dixon-Woods (2001), the PEMs based on the biomedical discourse constitute one-way communication. Another example was the biomedical discourse conveying a view of the patients as ignorant. Visualising healthcare personnel’s inherent assumptions about patients’ knowledge and understanding is essential. It is important to acknowledge that even if the patients are medically ignorant and seek medical knowledge, this does not mean that they are ignorant in other areas. We therefore suggest that PEMs be improved by customising the information, better adapting it to person-centred care by making it diagnosis-centred, reflective of prohibitions and supportive of the concept of patient-centred care.
Methodological considerations This study has some limitations. One example concerns translation issues. The translation of words and concepts © 2015 John Wiley & Sons Ltd
Discourses in patient education materials
from Swedish to English was tricky at times. For example, to give permission or to prohibit were expressed by the Swedish word f a r respective f a r inte which can be compared to the English may and respectively may not. This highlights the question that translation is problematic. However, in this study, we consider the translational issues relate to a deconstructivist approach (Derrida 1978, 1982; Derrida and Caputo 2003). Accordingly, translation is a means of releasing interpretation of text, partly to find any hidden assumptions therein and partly to provide text with meaning by placing it in a new context. A starting point, according to Derrida (1978), is that language, cultures and societies are always changing. That is why it is not possible to conclude that a certain word or a specific text has a fixed meaning or always refers to a specific word or thing outside the text (i.e. in reality).
CONCLUSION It has previously been stated that PEMs have the potential to substantially improve health literacy. In our view, the discourses disclosed in this study, both the biomedical discourse and the hospitality discourse, are pivotal in such an endeavour. When an individual is affected by a disease, information on care and treatment is important personally both to patients and their significant others. Likewise, it is crucial for patients to know that they are welcomed into health care. Tinges of paternalism inherent in PEMs nevertheless need to be critically considered and removed, thus substantially improving readability and suitability, which in turn would stimulate and motivate patients in their own self-care and learning. Further, a clarification of the discourses involved in PEMs would be of special significance in fostering a critical reflective stance among professionals regarding power and paternalism inherent in healthcare communication.
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